The Dishwasher Episode

Tonight I thought my brain was going to explode and it's not over yet.

I am still waiting for it to be over.

Booga decided to load the dishwasher.

Now, this is usually a pretty uneventful thing. I mean its scraping dishes and rinsing them and putting them in the dishwasher. But tonight, not so much….

He gets two dollars to load the dishwasher that he can A) save for something he wants to do or buy or B) spend at the school store.

Booga goes to a great school that is inclusive and has a wonderful performing arts center and technical center that teaches not only auto mechanics and child care but accounting, agriscience, building trades, business management, cosmetology, digital media and web production, electronics, food service and hospitality, health occupations, heating and plumbing, interior designs and etc. So it's a pretty fabulous school.

The business management runs the school store, which sells school shirts and sweatshirts and other propaganda, snacks and pop.

Booga likes the snacks and pop and usually if the store is open, one of the things he gets for good behavior is a chance to buy something at the school store.

So, he likes to earn money by doing small chores: Loading the dishwasher, running the vacuum, bringing clothes up out of the dryer.

These are pretty basic chores. It's not like he's cleaning the bathroom or mopping the floor or washing clothes. But don't think he hasn't tried.

Booga at one time tried to wash clothes and then decided to pour bleach in with mom's work clothes. From then on, I told him he was not allowed to load the washer; only mom or sissy, or Chewie, or dad.

Tonight however, Booga decided to put soap in the dishwasher. Problem was, we were out of dish washer detergent. So Booga decided that it would be a great idea to put dish soap in the dishwasher.

No. No. Oh no.

Now, we have a really sensitive, high power dishwasher. It's been repaired more times than I can count on my fingers and toes. It had a recalled part that caused all sorts of damage and after that was fixed it seemed to work fine. But you don't want to try and do anything cute in there like, oh, poach salmon or something. Because more than likely it will FREAK and you'll have a Salmon scented house for a week or two and be calling the repair at least twice a week for a series of months. We haven't replaced it because it was so expensive that we couldn't see the justification when we had warrantees to cover a lot of the repair. So we just sort of live with this high strung dishwasher.

Anyway, Booga decided to put dish soap in there and like always I had my ears opened listening to him stim while he was loading the dishwasher. Suddenly I heard him run into the bathroom.

This usually mean that he spilled water all over the floor which is something we have been working on lately because he has a tendency to be sloppy and we must be neat because the kitchen has a wood floor and we don't want to continually get it wet.

So I got up and went out into the kitchen and lo there were suds coming out of my dishwasher on to my wood floor and he was pushing towels up under it to stop it.

I about flipped out. It was all I could do not to loose my entire cool. I called my husband at work and told him and he told me to try and put it on a short cycle (there is no good way to do this). I tried to drain it by throwing water in it and canceling the cycle.

In the meantime I had to mop the floor with a towel all the way into the dining room because there were so many suds on the floor. I was so angry I was livid. It took everything in my being not to grab my keys and just get in the car and leave. What made matters worse was that Booga was stimming out in the living room and I was trying to get him to help me clean this up. Unfortunately he was panicked and was apologizing all over the place and stood paralyzed to help. So I kept throwing water in the dishwasher and putting it on the cancel cycle to drain it while he stood in the living room and displayed behaviors.

His hands were waving, he was vocalizing, and he was pacing like a leopard in a cage.

At first I wanted him out there helping me with the mess he made. But I was being held captive by

rage and I didn't want to take it out on him so I made him go get me used towels in the laundry room and take other ones down to the laundry room.

I thought, "Well, you were thinking that you should probably mop the floor-right?" And then I thought, "This is God's way of making you mop the floor." Although I try not to guess God's will. I just accept it.

So finally I sent him to his room because there was nothing else he could do.

I went over and banged my head against the wall a while.

That seemed to do nothing for the dishwasher.

So I went over again and threw water in the dishwasher and hit the cancel cycle again and tried to drain it out. I cleaned out the dish detergent pocket that he had put dish soap in and threw more water in and pushed the cancel cycle button again. I did that for awhile until I was convinced that the dishwasher was not spewing anymore suds out the bottom.

Then I went to the sink and watched the drain for errant suds.

I walked over to the wall, observed it and again banged my head against it, unconvinced that it wasn't helping the dishwasher. However, the dishwasher still seemed to be unaffected by my show of emotion.

Thinking that it did no good to stand out there and watch the thing, I came in here.

Okay, I'm now going to go check it again.

Still full of suds-however none are coming out the bottom.

And it's ten to midnight.

And I have to get up at 5:50 AM.

And I still have to get Booga to go to bed because he has to get up early too.

He's ready for bed, just not in it.

I just reminded him to go to bed but he's probably freaked out by the dishwasher episode. So this may be a long night. My office is next to his bedroom and he hates it when I work late into the night because he can't get away with getting up and having a midnight snack.

Hopefully this is the end of the dishwasher saga for tonight; however, I have had nights that have lasted longer than this…

I just hope this isn't one of those nights.

I just want the dishwasher to do its thing so I can go to bed and go to sleep without dreaming my house is being flooded by suds….

Muther of Todd.

 

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I Love Water

I love water; it’s something I’ve always been attracted to; one of my favorite activities in the summer or really anytime of year is swimming or snorkeling-I love to snorkel. If I’m anywhere near water, I’m gonna be in it. I love to go out in boats. I love the rain on cool spring days and on chilly fall days. But I’m not crazy about cold, rainy days that turn to ice.

I’ve never been crazy about ice.

I do like snow though. Not the craptacular, stinky, flurry activity. If you’re going to snow, then by golly, snow me in up to the roof on a day when I have nothing better to do than to be excited. We had a snow storm on my birthday one year and I couldn’t have thought of a better birthday present than a snow storm on my birthday.

Snow in and of itself is a beautiful thing. It covers everything in a silver-white icing and covers up all the indiscretions of the neighbor’s yard so I don’t have to look at their garbage that is thrown from one end to the other. Why do people use their yards as garbage dumps? Why can’t they show a minute worth of pride?

However I digress.

Booga loves to swim, and autistic people are attracted to water. Most children are, but for some reason autistic people love it with a passion that is really different and kind of dangerous. And for this reason, I wouldn’t run out and buy an Olympic sized pool for your child with Autism just yet. As was stated by this article: http://www.associatedcontent.com/article/2477826/the_risk_of_drowning_in_children_with.html, and published in a blog in the social area of the Autism Speaks website: http://autismspeaksnetwork.ning.com/profiles/blogs/drowning-leading-cause-of

Drowning is a leading cause of injury related death in autistic children; so you must be cautious with your autistic child around water.

Anyway, Booga loves to swim, I’ve mentioned that before, he is an excellent swimmer and the reason that he is attracted to the water is because he is touched by it and surrounded by it and can feel the pressure of it but it isn’t invasive. It engulfs him but doesn't secure him. Not like a hug. And it's not a human touch which is so often accompanied by a judgment or a restraint. And water has a rhythm to it; it has a consistency that attracts autism. It's like a repeating verse in a song.

And this is me noticing this- I noticed this- let that coalesce in your brain for a moment and then go on…. I noticed this- So what’s not to say that we are all somewhat affected by autism in some sense or another. Not that all of us are autistic but there are things that everyone does that is similar to Autism. Okay, so, if that is the case, then does that mean that when people start stereotyping the autistic that they are being hypocritical on some level?

Who doesn’t have compulsive tendencies?

I’m a germaphobe….Not to the point where I have to have every inch of my house antiseptic but to the point where if you touch the toilet or the trash can, raw beef or chicken, the cat liter, the cat box, pet the cat, or mess with the cats brush- you’re washing your hands-right now!

That drives my children nuts. And they think I’m a neat freak.

And I’m not, that would be my brother Bob. I don’t mop my kitchen floor every night with the Swifter. Although, if there wasn’t so much stuff on my kitchen and dining room floor I probably would.

So we’re all a little autistic to a certain degree.

There are days....

There are days.

Sometimes I just want to give up. Sometimes I just want someone else to do this. On days when he won't let me help and it's important that I do- sometimes I want to give up.

Unfortunately Booga doesn't understand that he has to listen to me sometimes. It's hard to be autistic and twenty because he wants to be independent and do things on his own, but he doesn't understand things like: what temperature the breaded shrimp need to be cooked at is it 450 or 540 or is it 54? And he doesn't get it when I make him wait or tell him that he can't play with the controls because if he tries to set the timer when the oven is heating up then it's not going to get warm enough to cook his shrimp. On top of that he doesn't know why the shrimp, chicken, or hamburger cannot be eaten unless it gets to a certain temperature. On television they put something in an oven and get it out in seconds. Why does it take so much longer when we make it?

 

Well, I can do nothing about the facts of life.

That's why they are the facts of life.

And we have to live with them and act on them because they are what they are-facts.

 

What makes it even harder is when he goes off and starts making sounds from movies like the sound of some monster screaming or something. These are sounds he makes because he doesn't know what to do with his frustration. Problem is that they are really annoying. And it makes me frustrated because I can't make him understand that I'm not trying to be mean to him, I am just trying to keep him from getting sick.

 

He doesn't want my help, he doesn't want me in the room watching him put food in the oven-in fact he doesn't want me watching him doing anything. He doesn't want me to watch him load the dishwasher (even though lately I've had to crack on him about getting water on the floor). He doesn't want me to watch him bring the laundry upstairs. Even though I know that it is a nothing job and doesn't require me to watch him. It's like anything else; there are times I am going to be doing something downstairs when he is down there. He doesn't want me to sit at the table while he is drawing. And I don't know why this is….Other than one time I didn't allow him to touch my water colors and I regret that I did that. I wish I could get him to sit with me and paint now. He's only painted with me one time and that was when he painted "The Nativity".

 

I got mad at him today, and I told him that if he didn't stop being loud and screaming that we were going to take the door off his room and his movies away. I also told him I was angry with him. That was probably a mistake because he probably is internalizing it right now and later he'll repeatedly tell me that he's sorry, when all that is required is that he stop doing the thing and say he's sorry -once.

There are days when it is harder than others. Days when you want to bang your head repeatedly against the wall. Days when you wonder what it would be like to have him be ordinary, so that you could get on with your life. Days when the loneliness that comes with being a primary caregiver to someone with such a disability becomes somewhat of an overwhelming thing and you want to crawl off to a quiet corner and write things to that will be sent off to the ether. Things that only you will read while the warm, wet, tears creep down your face.

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~ Est queadam fiere voluptas.There is a certain pleasure in weeping. (Ovid) ~

Family and Friends

Friends

In an email to a friend recently I wrote about something that happened at a car dealership and I thought I would share simply because I was reading it today and felt like I was going to blow coffee out my nose from laughing so hard, I don't know, maybe you would have to have been there. However, I included a couple other things I thought were interesting too that I have shared through email or blogging :

I am sending you a video of the car dealership I was in when I was talking to you- you don't get to see the lunatic, drunk dude trying to tell me that I looked "Just like my niece" like twice.

You know, once is okay. Twice and it's like your hitting on me.

I almost expected a Mariachi band somewhere to start playing....

I mean, I was so angry, of all the days for me to have to bring my car, why, why did it have to be the day that they were having their "HUGE BLOW OUT OF 09 CARS!" I tried to be nice about the homeless, drunk guy, but I was nearly ready to ask him why he was talking to me? (I know, rude…Couldn't help it, I was annoyed as it was) And that was before I talked to you; after I talked to you, I was thinking I was going to be able to leave because they had pulled out this loaner car for me, but a couple of things had to be done before I took the loaner car???

So I was staring out the window into the garage watching them do virtually nothing and this little, tiny 180 year old woman who had dragged her husband down the stairs into the waiting room (and had gotten mad at him for nearly falling because she was dragging him down the stairs) started talking to me because I got too close to her. I can't think of any other reason than that. (Other than her husband -who was likely 220 - was unable to carry on conversation in a meaningful way anymore). Any who she talked about her car and then she talked about her inability to remember where her hearing aide was and then she talked about the school systems and how she had been a teacher for five years. And then she told me about her granddaughters divorce and how her grandson-in-law was heartbroken and told them that he would really like to keep in touch with them and how rotten her granddaughter was.....And then about that time my loaner car was ready...Thankfully.

And it about killed me because before I could get in my loaner, their car was finished up and my loaner had to be moved so they could leave (which meant I had to wait even longer to leave; which ticked me off even further because they had gotten there after I did)...And I saw them get into their almost new SUV and struggle to see above the steering wheel and struggle to manage to drive away and I thought...."Muther of Todd! Why is someone who is 180 years old and barely able to hear with a hearing aide and is beginning to lack the ability to connect socially with other creatures of the human species, driving something like that?"

And we wonder why they are fishing senior citizens out of lakes, rivers and ditches…And why they are blazing into farmers markets and killing innocent bystanders.

_____________________________________________________________________

http://www.nydailynews.com/travel/2010/01/21/2010-01-21_holiday_inn_location_in_london_offers_human_bed_warmer_service__a_staffer_to_war.html

Sorry, I'm not getting into a bed that some random stranger that's getting paid less than they ought, is getting into simply to warm it for me. I have a hard time allowing myself to be massaged by someone that I didn't have a long meaningful relationship with or that didn't at least buy me dinner first.

I have this feeling that-like most services that bigger hotel chains offer-this one will be scaled down in third world countries to mean that the resort's owner's kids will come in, in their shorts and t-shirts and climb into your bed with sandy feet and warm it up for a Peso or Jay, depending on your choice of third world country.

<Insert Mariachi band here>

Large Pressure Crack on Houghton Lake

I know how that is, I crack sometimes under pressure too....

Police Investigating Shanty Break-ins in Otsego County

and the story starts like this:
Shanties are being broken into in Otsego County, now several ice fishermen are missing equipment.

Now here's my thing, fishing shanties in and of themselves are not by any means permanent structures, if they were they wouldn't survive the lake becoming a liquid again. So honestly, how hard would it be to break into one? Bigger than that why would you leave your gear in there? For one, the lake could go through a warm up, the ice could crack and melt and your stuff would crash through and be underwater. And it's like leaving the keys in your car and the doors unlocked, in a big city and believing no one will bother it.
I mean come on!
*sigh*

Family

When Booga was small and I was going through the process of finding someone to diagnose him…. (Because I had a hard time getting someone to give me a confirmed diagnosis of Autism) I went from doctor to doctor trying to secure a firm, solid, diagnosis. I was pretty sure I knew what I was dealing with, however, I had to get a doctor to say, it was what it was, otherwise no one could really treat him, or apply appropriate teaching techniques, or a host of other things that could be an opportunity for him by being diagnosed correctly.

So I learned how to quickly fill out forms at the kitchen table. I learned his social security number by heart. I could tell you every test, every medication, every therapy tried on him. And I had gotten to the point where the crying was intermittent. It happened when I filled out forms that made me remember his early toddler years and made me relive in vivid detail all the signs and signals that lead me to believe that something was terribly wrong.

So one Sunday afternoon while the chaos burned around me (which was- and still is- the constant state that was my parent's house on Sunday afternoons) I sat at their kitchen table and began filling out another form for a neurologist that I would see down state the next day.

No one, aside from a parent of a disabled child, knows what it is like to fill out one of those questionnaires. You sometimes feel as though you are opening up a wound in your own heart with a dirty, dull carving knife and twisting it around. Every emotion that you felt at the moment you were having this event happen, swells up inside of you and before long you are trying everything you can to hold back the tears.

Now, in my family, unless someone has died, you don't cry. Unless you are a wuss, and you don't want to be a wuss in my family, so if at all possible you leave your crying for when you are alone or in the car, or at a funeral. So our funerals are full of people in my family, crying for not only the loss of a loved one but for every painful thing that has happened since the last funeral. (To this day if I cry in front of my husband because of a song, or because I am stressed or because of a movie, I feel like I should be ashamed of myself-which is why I don't like Country Music.)

So here I sat in the kitchen, playing back the videos in my mind of all the things that Booga had gone through in his life time to get to this point and all the pain came back and I felt myself start to dissolve.It was about this time that my teenaged niece, Karin, came in and happened to glance at me, trying to be stoic and failing miserably. I could feel the tears trailing down my face, just like I do right now. (Thankfully no one is home but me.) However, I couldn't hold them back and I was very angry that this doctor was so insensitive as to make me tell him the story of my son's life. How dare he make me cry!

Just about the time I was ready to gather the papers up and move into some room where no one could see me filling these things out and falling apart at the same time, my niece came around the table and sat down next to me and put her arms around me, and held me for a few minutes, and it was then that I let loose. I didn't want to but I did. It was a lot of things and not only the fact that I was writing down these hideous memories that was driving me to allow myself to cry, but it was also the fact that finally I knew someone in my family actually knew that this was racking me emotionally and that this was one of the hardest job any parent had to do.

Its one thing to admit your child is sick because they came down with Leukemia or had gotten Polio or something like that. It is another thing entirely to wonder if this thing that has happened to your child might be your fault for something you did during your pregnancy or that is genetic or that may affect them for the rest of their lives, like it will be with Autism and not know what it is…You can't help but wonder if there was something you could have done or if there was something you could do right at the moment. You are not to the point where you are finally okay. Where you can go, "Okay, this is who he is and that's okay."

I was always worried my family would shun Booga because my family is full of very educated, opinionated people. It was after this that I realized that my family was full of people who were going to love Booga anyway. And that Booga would educate them in a way that no amount of classes would.

My nieces and nephews, my older son and daughter, grew up doing papers on Booga for college; they considered careers in psychology specializing in special needs because of Booga. They defended special needs people, sometimes physically, because Booga is in their lives. Their understanding of this special human being has enhanced their lives to make them even better at what they do and who they are as adults. I'll never forget the sound of my niece Bethia's voice as she walked toward my parent's house and saw Booga standing in the yard.

She yelled his name and greeted him with such happy anticipation that I knew that he never had to be worried that his cousins wouldn't understand or love him.

Even when he dumped all the fish food for Micheal's fish into his fish tank and at Micheal's confirmation party, and Michael had to do an emergency cleaning of the fish tank. Even then I knew it was going to be okay for Booga to be Booga and that they would love him anyway…Michael would just have to keep the door closed or put the fish tank higher or something….Laugh Michael, it's funny….

I can't help but think that only good has come from him being in our family and there is no other family I can think of that would treat him better or love him more than this one. If you are to be born into a family full of love and acceptance, then there is no better one than this one…At least that is my opinion….

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~There is a certain pleasure in weeping. (Ovid).~

More Jamaican Photo's

Photo's From Jamaica

This one actually isn't from Jamaica...I wore these glasses in Jamaica though....So appropriate.

Random Images of Our Lives

The Tooth of the Matter

Booga had a problem telling us when he had a tooth ache, which was rare. It was generally his baby teeth falling out.

You see, at seven/eight/nine years old when kids who are not intellectually challenged start losing their teeth they think it’s neat. But when that happens in our kids who are intellectually impaired, they freak out because their teeth are loose and they don't know what’s happening. So for Boog's dad and me it was a guessing game. "Okay, is he in real pain or are his teeth coming out because he's getting his permanent teeth?"

He'd point to his teeth and tell us he had a tooth ache, in a way only we could understand-because he had the language skills of a child of three. He could talk to us and a speak in sentences but sometimes the words were slurred (and sometimes they still are) and sometimes the way he had decided they sounded- was totally different than what the word was suppose to sound like to us and so- like a child of three.

And because he doesn't always tell you that something itches or that something is bothering him, you find out in other ways like from his teachers....

"Did you know that he has a rash on his arm?"

"Well, no. He wears long sleeve shirts and since he doesn't let me dress him anymore I don't see his arms."

(I mean seriously...I guess if that is all you do all day-watch behaviors- what kids are doing- then you would see that sort of thing whereas I'm not always looking at him and I don't see him most of the day).

We were always on alert when it came to our other kids getting sick because more than likely he would get sick too. And when he was small it made it really difficult because I was working at a college as a lab assistant in a computer lab at the time and I wasn't always able to get off work. (One of the reasons that I feel blessed that my husband makes it possible for me to stay home now and take care of him).

It does get easier over time and believe me when they are in real pain, you will know. They will make it incredibly clear! Pain is something that even children with Autism will scream about. I mean, you might not be able to talk but you can scream. It's a basic instinct.

Not too long ago Boog woke me up in the morning, which is weird because he never does that. Boog sleeps like a rock (which is the antithesis of what he was like when he was a toddler-he didn't sleep-literally didn't sleep- until he went on medication at the age of three or four) and he woke me up and said, "Mom, I threw up."

(I guess I was just pleased he didn't call me Mrs. Angryman Jameson, which is his non-de-plume for me when he is mad because I have told him to stop stimming or he's being disciplined.)

And to be completely honest, it stunned me because he actually told me he threw up.

When he was little he would throw up and you would find him throwing his dirty clothes down the laundry shoot or trying to hide his pillow under his mattress or something like that. He wouldn't tell you. He'd throw up and then go on with whatever he was doing, he didn't lay down and sleep, it was like he wasn't allowed by his brain to lie down and feel bad or sleep.

But now that he's older he tells me and now, apparently, he’s going to tell me when he is sick and has thrown up. So, that's a good, new development.

Weird hua?

Thank God.

One minute with a truly insane lunatic...

I want to apologize for the apology that I apologized with in this apology.....
A moose bit me. Love and Kisses, Shari

Three minutes with a lunatic....

Well, I want to apologize to everyone for my latest transgression against the written word.
I was writing late last night and when I went to read what I had written today- I about choked.

There were massive errors and things I didn't like and sentences that were redundant.
It could've been because I was so tired from cooking that massive recipe yesterday or because I was just distracted by the autistic man in my kitchen that was having meltdowns over water.

Sweet Grandma’s socks!

There are reasons why Booga isn't allowed to get water all over the floor.

We had to replace the kitchen floor a few years ago, primarily because for a while we were so poor we couldn't afford to fix the sink that was leaking and the floor got massively warped from water. For years I couldn't use the space under the sink because the floor of the sink simply as thin and flexible as cardboard that had gotten wet.

The guy that built our house built it for the Farmers Home Administration.
Now, here's the thing...back then (and I don't know if it has changed now) the FHA homes were done as cheaply as possible and with stuff barely good enough to get by the inspectors.
Our house was built with materials that were five seconds from being used in a single wide trailer. The cupboards were the cheapest material possible, the sinks and bathroom fixtures -as cheap as they could get, the doors were the cheapest they could buy and they cut corners every where. So now my husband and I are basically rebuilding our house.

This was supposed to be our starter home. But with Booga, and his disabilities, and as quickly as our children grew up around us, we never did move to another home. Instead we started to rebuild this one from the inside out. Starting with walls and floors and cupboards; and believe me, we are now very much aware how much it cost to fix this house and we're very much aware of how much time it takes and we really don't want to have to do it again any time soon (because for one, we need a new roof now).
Booga has been instructed how to do dishes without getting water on the floor. (It's not that hard, you rinse off the dishes and put them in the dish washer, I truly don't consider it dishwashing in the traditional sense). And it’s not easy to get after Booga for something he’s doing wrong, if you just look at Booga with disdain he crumbles like cake. You really can't be sarcastic with him because he doesn't understand sarcasm (which is kind of a blessing from God really) and you can't raise your voice to him because he will dissolve into a puddle of despair.

Imagine then, my situation where it involves disciplining this child. Especially in this particular venue, and imagine me writing about it at the same time.
Yes, that is the problem I was having in the evening of last.

My life is full of fun, fun, fun.....

Ah! My home is a spa!

Good news is that he’s over it now and hopefully my kitchen floor will remain water free until the next time I mop.

We can only hope.

Pray for me people.

Photo's From the Edge

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All About Autism and Grinding teeth,

Medicaid and Medical Insurance, Julia Child,

Beouf Bourguignon and Chocolate Cream Pie….

But, not in that order.

When Boog was six or seven years old he was taken to the dentist who promptly informed me that Booga had ground his back teeth down to the gums and that they would have to be SURGICALLY removed….

“YIKES!”

So we had to take Booga to a dental surgeon and get his opinion on the matter; and luckily there was one in the same building as his dentist. ….Here’s where it got sticky, we had to drive an hour to an hour and a half to get to the dentists office because Booga had Medicaid. So this became an ordeal for a couple months.

Our other children didn’t have medical insurance at the time, so any time they had to have any dental work done, we had to save money for it or sell things. So it was a God’s send that Booga had Medicaid.

Are you listening Republicans?

In fact, my husband and I didn’t have dental insurance until last year…Our daughter’s teeth, our older son’s teeth, and our own teeth, came out of our own pockets. Not cheap by any means.

Anyway, he had to be admitted to a hospital and have his teeth removed, and luckily it was day surgery. However, I will never forget my parents driving me home with Booga still reeling from anesthetic and throwing up black, stale blood.

Ugh!

And try to explain to an autistic child with a sore throat that even though they don’t like the texture of popsicles-the cold will make their mouth feel better or that they may not like the texture of ice cream but it will make the those gums feel so much better. Or that they can’t have those chips because they are going to really hurt to eat.

Yeah.

Oh joy.

……………………………***************************………………………….

This wasn’t the first surgery Booga had to have. His first one was when he was about a year and a half old. He had to have his tear duct opened up. He was on insurance (through a large insurance company) for children without Medicaid at the time.

I’m sure it was a tax write off for the company.

( Thought process being: We’re gonna invent this insurance for children without insurance so we can write it off of our taxes because we need a write off, because we make too much money and the government is going to ram it up our butts when it comes tax time…)

Unfortunately, as Booga started to go through diagnosis for his Autism, the insurance company dropped all my children because of Booga’s “pre-existing” condition. It wasn’t called “a pre-existing condition” to my face, at that time, but now that I’m not as naïve as I once was, I know what they did and why they did it.

At the time they dropped all my children, I called them and begged and pleaded with them and the woman on the other end kept going on and on and trying to justify it and finally she told me she was hanging up and that was it. It hurt me and made me angry. So, it was around that time I became a Democrat.

…………………………………Cut on the dotted line……………………………………

Currently Booga is having meltdowns because he is having a hard time doing the dishes without getting the floor wet. He says it is because he spills the water that accumulates from bowls and pans being right side up in the dishwasher. I showed him how to make it so the water doesn’t accumulate in the dishes and pans. But I also told him that “meltdowns” won’t be tolerated and that if he doesn’t stop having them I am going to take away his Julie & Julia DVD. This particular punishment is because Julie has “meltdowns” that he finds hysterical in the movie and he has a tendency to reenact scenes from movies he likes when he is going through daily life.

Really brings home why you should be careful what you think is appropriate to put on television and movies and or what you should allow your children to watch. Not that there is anything wrong with having a melt down, but what if it was something more than that or something more sinister than that?

One of the reasons that Booga will never watch the movie “Sweeney Todd”.

…………………………………..Cut on the dotted line………………………………....

So today we made Boeuf Bourguignon for dinner. Not an easy task.

I found the recipe online and woke up this morning knowing I would have to cook it.

I planned on doing it for almost a week. I planned our grocery shopping around it. And I studied the recipe after I got it from the Knopf website . They have a PDF there and I printed it out and sat for hours staring at it trying to see the techniques in my head. Some of the wording has gotten to the point (which blows my mind because it was only a little less than fifty years ago the thing was written) where it’s almost archaic and difficult to translate for the common cook. Booga loved it though.

Yesterday I taught him how to make Chocolate Cream Pie. It’s a simple recipe and the one I do is sugar free and sort of an ABC method. A lot of cooks would poo poo it but I don’t care. We’re dealing with Autism.

It’s basically sugar free chocolate pudding, with sugar free whipped cream and a graham cracker crust. And that’s it.

It’s easy for him to make.

Now the Boeuf Bourguignon…That’s another matter….

Holy moly.

Booga wants to help so I woke him up this morning because it’s a process that takes a good five hours. First you have to get the meat dried and cut up the vegetables; and before any of that took place I had to find my pans.

I don’t have a large kitchen.

I have pans all over. Even in the entrance to the basement there are pans.

And cooking with Booga is like cooking with an eye patch and a broken arm because he wants to learn but he’s slow at getting things done. Taking a shower, putting his clothes on and cutting up carrots- these are major league tasks for him. But he wanted to make this so here we are.

Now I am someone who is used to making dinner quickly, I usually know what I am going to cook and can tell you the ingredients off the top of my head. If it’s something I am looking at a recipe about, then it’s not a long recipe, it’s only a page long. Boeuf Bourguignon is three pages of recipe- plus a recipe for mushrooms and onions that goes with the recipe for Boeuf Bourguignon.

So I flew around that kitchen with Booga cutting up the vegetables while I browned the beef and Booga pouring in the wine (a lot of wine, like nearly a whole bottle of wine) while I took pictures. He enjoyed making it. It did take all afternoon with the cooking of the thing. He also ate almost three plates of it.

Personally I thought it was okay. But people who don’t care for the strong wine flavor- I would probably suggest that you use more broth and less wine. I don’t know if the gravy part of the stew is going to be affected by the lack of the “body” of wine. But it’s something you might try so that you get more of the beef flavor and less of the heavy wine flavor.

Honestly, I felt like I was getting trashed on just the smell of it cooking in the oven.

Whoa!

And it’s a heavy stew. It’s really really rich.

Not for those on a low-fat diet.

By the way, sugar-free chocolate cream pie is a really good desert-albeit an ironic choice- to go with Boeuf Bourguignon. It was deliciously chocolaty and if I could’ve I would have eaten half of it. Nummy.

The Rain Man Thing

I get tired of people calling me a saint or some kind of miracle worker. The reason Booga is where he is, isn't because of me alone. It's God, some good teachers and some good mental health case workers, an understanding family, a good husband- and good kids and then me- that has gotten him where he is...

This miracle took place- by no means-from my hand alone.

The "Rain-man" thing...Oh the "Rain-man" thing is the worst. I pulled him out of a play at school because I could over hear the parents at this little "exaggerated one room school house" whispering, "Oh, that's that Autistic kid." And so forth. I got really tired of the mentality that went along with their narrow-minded small town prejudices.
I had to explain he wasn't a "savant", to the point where I would just smile and nod- I was so tired of it- the effort to inform them wasn't worth my strength.

He isn't some kind of side show freak...He's not "Rain-man"....He's not going to tell you what happened on the day you were born... I always felt like I could hear people shifting around in their seats when he would come out with other kids so that they could get a better listen or look at the "Autistic kid".
I mean, I'm glad it became a topic of discussion in the United States and that people are taking note of it. However, I get really tired however of my son being this "novelty".

Shut Up About Your Perfect Kid!!!

I Expect Booga To Do His Best...

I expect Booga, to do his best to make people understand him and I know sometimes that is really hard for him, I mean imagine- you have all these things you want to express through words but don't quite know how to do it. I ask him to do his best and sometimes that requires that he stop in mid sentence and try to pronounce a word that I can't quite make out.
I say, "Boog, I don't understand you."
And you can see the frustration in his eyes. Then he either tries several times to pronounce it again or finds something to show me that means the word or the word itself from some source.
I've been doing this since they wanted to teach him sign language and I told them, "Well, that's great if you’re deaf, however, he can hear and I know he is able to speak."
From there on out if he pointed at something I made him tell me what it was and if he couldn't tell me I told him to look in my eyes and I would turn his head and make him look in my eyes and I would point to eyes to make sure he knew I wanted him to look in my eyes and I would even say, “Look at me!” And then I pointed at the object and said what it was, and repeated the name of the object until he repeated it to me. Then he was rewarded with it.
After awhile, he understood, and I would work on words with him; finding ways for him to understand how the word sounded until he could come up with that word and in a fashion get the idea across.
This took years.
Booga speaks in sentences now. He conveys thoughts. He is far more than his diagnosis. And far farther than the child that they told me at five would probably never talk, be potty trained, or have any kind of meaningful life.
Boog can communicate, he is functional. But he is still intellectually impaired. He is in high school with the mentality of a twelve year old. However, he's not impossible to live with. Does he stim? Yeah. Does it get annoying? Yeah. The screaming gets annoying. But we say, "Hey, knock it off!" And if he doesn't knock it off he goes in his room.
“Go to your room and do that.”
And if that doesn't work he gets things taken away. And he hates that so he goes in his room and tries to avoid breaking anything. Because he gets “paid” for chores (it’s not an allowance, we all live here and have to do things to live in the house, carrying a laundry basket upstairs is not a huge ordeal ) and anything he breaks or throws away, comes out of his money.
A lot of the stimming I can live with and for the most part the more annoying stims have decreased mainly because he can communicate with us in some form. But when he is frustrated by something they are still there.
The biggest problem we have with behaviors is that there are no filters on him and so we get all the internal dialogue going on his brain. So nothing is hidden about how he feels about anything and nothing is kept under wraps and sometimes it can be embarrassing and painful.
It’s difficult to hear him refer to me as “Mrs. Angry Man Frustrated Jameson” which for the longest time I didn’t figure out was his name for me but apparently this is what he calls me when he is thinking about me (even though he does call us by “Dad” and “Mom” and his brothers and sisters by their names).
So learning to communicate with your autistic child and helping them to communicate meaningfully is a long journey down a winding road indeed. I wouldn't go back there and have to go through that again for all the tea in China.

Bon Appetite! Limitations,Church, Religious Concepts, and Disappointments....

Booga has fallen in love with Julie & Julia…

 

He loves that movie and I think it's a good movie. It's interesting. I think I like the history aspect more than anything. It does open areas of interest in Booga that I think are good to address. For one thing he now wants to learn to cook.

Well, that's fine. I am not going to go overboard and enroll him in culinary school like some parents would. I am going to teach him to brown hamburger and he can learn to cook slowly like I did. Learning to cook fast is like someone learning the alphabet and then being expected to read. It's not that easy.

 

And teaching an autistic child is different than teaching an average kid. You have to literally put your hands behind your back and allow him to do his own work; which is hard because you want to help him. There is a clumsiness involved with Booga that goes against everything I learned about cooking also and that's hard for me to stand there and watch.

 

But I don't put limitations on him. He can do what he wants.

 

So far he has made:

Taco Lasagna

Taco's

Low-fat Brownies from a mix.

 

I would have let him do dinner tonight but it's one of those meals I just throw in a slow cooker and forget about it.

 

Here are a few words on not putting limitations on someone.

 

Okay, I don't put limitations on Booga as far as what Booga wants to do. I suggest to his teachers that he might benefit from this or that or that he expresses an interest in this or that, but I don't go out and force him to take drawing classes because he is interested in art.

I don't force him into culinary school while because he takes a passing interest in cooking.

If he wants to take classes and we can find these classes adapted for people with special needs-well, then great.

If we can't (which usually doesn't happen) well, then we'll just keep looking over time and eventually there will be a class or a situation for him to take advantage of his interests. Just like this play he's in right now.

 

I think a lot of time and effort is put in by parents of average children and children with special needs and especially autistic children to find that one area that they will excel in (autistic children especially because of the whole "Rain Man" thing) when sometimes it just needs to naturally happen. To do otherwise is to spend a lot of time and money doing something that is just going to make you frustrated.

If your child has a passing interest then, in about a week it will pass. However, if it persists then you can encourage it by buying them books on it or perhaps talking to their teachers about opportunities to learn about it at school. They might even know of a class that your child can take that is geared towards children with special needs. But for pity's sake, when I say, "I don't put any limitations on Booga," I mean, I don't put any limitations on what he really wants to do, what he shows more than a passing interest in and what can be gotten from either school or from the people that work with him in the school system and mental health services.

 

If he wants to be working in movies, I am not going to force some person that knows nothing about autism to try and include him in a film class. That is unfair for him, it's unfair to me and it's unfair to the people in the class. It's especially unfair to the instructor.

However, if it's a film class geared towards people with special needs or has an instructor willing to take the time and who has the patience to work with a special needs student, than by all means, I would have him take it.

 

You are working with a world that is learning to change for people with special needs; we can slowly help them to acclimate. We can't force this, it's unnatural to force change, and it's realistic to allow it to change over time. You suggest the change and let it allow it to happen, and I think that is best. It makes everyone do the best job they can because they have the time to think about it. Sometimes the suggestion to someone like a classroom aide or a special needs room teacher can spark a fire that will warm many.

However you don't throw your child into the cauldron of fire and expect good things to come from it, you simply don't.

 

It's patience people. Have a little patience with your kid. Have a little patience with the rest of the world. Average people who now populate the world are terribly slow.

 

Church

 

We are fortunate to have a pastor whose wife is a special needs teacher. It's like a blessing from God because he is well aware of children who are intellectually disabled.

 

He formed a special needs Catechism class for my son and Booga is a confirmed member of our church.

 

This was not always the way.

 

We have come across those who believed that Booga would never be able to be confirmed in the church. But apparently God had other plans.

 

Booga copes with church in a way that is unique. I have been aware that it is hard for Booga to be in a room where it echo's or where there are lots of people for a long time.

My girlfriend and I would take him to movies and five minutes after we got settled in the theater he would want to head to the bathroom for a self-stimulation episode that might go on for several minutes- until he got his ya ya's out.

She suggested (and this was one of the suggestions that actually worked and I would suggest this to you also) that you take your child into church and into the theater and make them sit in the theater or church for longer and longer periods of time until they figure out that their heads are not going to explode or that the world will not end or at least they get use to it.

It does work. It just takes patience and time.

 

Another thing I allowed him to do is to go to the bathroom during church so that he can do his self-stimulating and get it out of his system and then come back. At first I went with him until I figured out that he could get back on his own. A couple of times I had to intervene and tell him it was time to come back or "No, you can't use the elevator anymore. You don't have cause to use it. It's not your stimming haven." To which Booga would answer and tell me that he was "not stimming mom!"

 

Another thing we found was that occasionally Booga does some inappropriate things in church like, oh say, crossing himself or using lines from movies during church or telling people about movies he's seen, like they care.

The "telling people about movies he's seen" thing is something people generally blow off. The crossing thing on the other hand, well….

Booga likes to watch "The Rosary" on the Catholic channel ETWN. And that's fine I guess. It is a pretty poem. However, I have to repeatedly remind him that we don't cross ourselves (He's seen it on television) and we're Lutheran. I had to do it yesterday when we were done taking communion. Then I sat down next to him in the pew and drew his face close and told him not to do it again and then I kissed him on the cheek.

 

Terms in church sometimes perplex Booga.

The concept of sin is something that children with special needs sometimes have a hard time actually understanding and because our beliefs require that you examine yourself before you take communion I had to think of a way for Booga to do that.

I found that he understood it once I explained it in "Booga Speak" (which is the way he puts things when he talks to you).

 

I told him that sin is "Being naughty to God."

And he understood what being naughty was, so he understood what being naughty to God was. So in self-examination, I asked him, "Booga? Are you sorry for being naughty to God?" And he says, "Yes."

 

I have to simplify some prayers. I told him to pray to Jesus and thank him for dying for him on the cross and it goes like this, "Thank you Jesus for dying for my sins-Amen".

 

That's it.

 

 

At the dinner table, we pray "Come Lord Jesus be our guest, let this food to us be blessed- Amen."

 

It's simple. He remembers it.

 

I wish sometimes that I could simplify life for my other children.

Booga has over time, learned to deal with some real disappointment and he's also had to learn something about change; which is a real challenge for someone who is autistic and doesn't like change.

This doesn't mean he doesn't have hissy-fits anymore. But we've learned to present disappointment, walk away and just let him explode sometimes. This is an ongoing project as far as Booga goes. How do you disappoint and not have to deal with a melt down?

Sometimes we have to reiterate that something is not going to happen or we have to repeat that something is going to change or when the change comes you have to deal with the inability to process the change. It's not comfortable and I doubt it will ever be comfortable. But the reality is this; there are sometimes things you cannot do anything about. In these circumstances it's almost easier for us to present the situation to Booga and let him freak out about it.

Sometimes it easier to present change or disappointment to Booga than it is to present something disappointing to our so called "normal" children.

Because we expect Booga to melt down and we expect our other kids to be adults.

 

It's true.

 

There is some kind of wild questioning that goes on when your average child gets angry and acts out. You do this, "Whoa, what's that about?" Which seems unfair to your average children, because really, why should they have to be any more adult about something than a sibling who is not that much younger than they are?

You almost expect them to be okay with it and work with you because you have this ginormous task with the other child. They have this sibling who is different and has some real special needs and needs more attention than they do.

In these instances you do have to be understanding and patient with them and you also have to be really careful that you are not expecting them to put up with something that you yourself would not put up with.

And disappointment and change is sometimes not about us- but about the facts of existence that compels us to have to disappoint them. And sometimes life makes things we would like to do-inconvenient.

We're not trying to punish them in any way when this happens; it's just reality.

Sometimes things don't work out the way we would like them to work out.

Sometimes we don't have the time we wish we had.

Sometimes things come up that we aren't expecting and we are disappointed in not being able to achieve something we had been looking forward to, however that is life; pure and simple.

Life sometimes is inconvenient.

 

And it's something that is uncomfortable for us too.

Doesn't mean we don't love you, it's just life.

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